Aunt’s fight for brothers with genetic illness

The family of two boys battling a terminal genetic illness are urging the government to spend more money to help fight the disease. Ben and Damon Geraghty, from Kingsway, suffer from Duchenne Muscular Dystrophy (DMD) – an extremely rare disorder which weakens the body’s muscles.

Sufferers have an average life expectancy of just 18 and on average must use a wheelchair by they time they are eight.

Nicola Geraghty, the boys’ auntie, is determined to help improve healthcare for DMD patients who can survive for longer with the right treatment.

Damon, 13, is now wheelchair-bound and was first diagnosed when he was just five years old.

Ben, eight, can still walk but is likely to need a wheelchair within the next few years.

Nicola, who looks after the boys each weekend, said: "The last seven years have had their ups and downs.

"We have come to terms with it and we must now make Damon and Ben’s lives as good as possible for them.

"Getting the message out by doing fundraising is a coping mechanism for me.

"We might not get what we want in their lifetimes, but we can work towards it to help other people.

"They are a lot braver than you or me. I do not know what they are thinking in private but they never get upset about it.

"They are lovely boys and when I am with them I forget all about what is going to happen."

Trainee nurse Nicola, of Manchester Road, Sudden, is also the north Manchester lead volunteer for the Muscular Dystrophy Campaign. This year she has raised £10,000 for the charity – enough to help fund research into the disease for about two months.

She added: "Sufferers of DMD are just as entitled to the same access and quality of care as anyone else with any other condition.

"These sorts of services have always been on the back burner because DMD does not affect as many people as other illnesses.

"At the moment the boys have regular physio because they are still children.

"But it is when they get to adult services we find that nurses just do not know anything about it and there are no services available to help them."

Damon and Ben’s mum had been a carrier of gene that causes the disease without suffering from it.

There had been no previous medical history of the illness in the family.

The boys now live with their grandparents on Turf Hill, Rochdale, with Nicola providing respite care at weekends.

Nicola met with government officials at the Houses of Parliament on Tuesday to discuss the lack of services available to DMD sufferers.

She added: "Evidence shows that better care does prolong life expectancy.

"In the UK sufferers are not expected to live past their teenage years.

"But in other countries such as Denmark men with DMD have lived until they are 40.

"It needs more funding and more awareness.

"We are making progress but we have nothing in place.

"We do not want to see other families go through what we have had to go through as we have had to endure a lot of blood, sweat and tears."